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05/04/2012 07:52 AM

Still don't know limits

kjv1956
kjv1956  
Posts: 937
Member

Well Heck,

Still trying to figure out how to cope and take care of myself. My bestfriend is getting married on Sat. She is not one bit organized and has been driving us all nutty by trying to put a wedding together in one month. I am the one who sews, beads, quilts, flowers etc. Well she found a beautiful veil that needed some bead work done. What do I do? Yes, I said that I would repair it. My hands are not working as they used to. Now the hand beading is causing my hands to cramp and shake. When will I learn that I cannot do everything that I love to do. I really do hate RA. My work used to be beautiful and in great demand. Now I sit here and cry trying to finish a repair job. I truly hate the days when I realize that another part of me is gone. To many losses and tears. Had to call out of work today from overdoing yesterday. I am going outside to watch my pelicans sore above me and let my Papillon think she can catch them.

kjv1956

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05/04/2012 03:07 PM
JoLoBa
 
Posts: 458
Member

I am so sorry. I had the same reaction when I realized my hands had lost the ability to knit. I had an easy afghan, a featherweight shawl, and a fisherman's sweater on the needles. Knitting is more than just a craft—it's almost a meditation.

On a knitting and crocheting forum site, Ravelry, there's a knitters with arthritis group. I learned from them that I can get in bits of knitting if I wait until evening when I'm generally looser, go in short spurts, work much more slowly than I have since I was 12, soak my hands in warm water (cold just doesn't work for me and the soak is better than heating pads), and wear wrist supports I had for carpal tunnel. Seems like a lot to go through but, when you love the craft and miss it so much, it's worth it.

Oh, for the easy, lazy afternoons spent knitting on the screened porch! I really do hate what RA puts us through.


05/04/2012 06:22 PM
gettingoldsucks
gettingoldsucks  
Posts: 3428
Senior Member

Kjv, these are the kinds of things we learn to work around. Some loves are stopped and some have ways around them so we can continue doin what we love. Great example, JoLoBa.

I have already given up mostly everything. For now...anyway. I was heartbroken when Reading stopped for me. My favorite pastime. It is just to hard on my neck and triggers eye nerve pain quickly. Took me many years to give it up and much afterwards suffering. It's just reading, right? Why do i have to stop something so simple?

I have faith that treatments will allow it again some day. Same as I believe RA meds will allow all of us to do the things we love. I want to paint ceramics again....put a puzzle together, clean more then one room at a time or clean anything at all at times.

This disease sure can open your eyes....even when it shuts down your body.

Hugs, Donna


05/05/2012 05:14 AM
claphappy
claphappy  
Posts: 4022
Group Leader

I gave up Needlepoint. At first I thought it was just a stiffness in my fingers. I went to smaller projects. I wanted to do one for each family member. First Mom and her sister, then my 3 siblings. I loved the outcome of the art work that even I could do. I never got to make myself one, had to stop 1/2 way through. Oh well mine was of wine bottles and I had to give that up to. LOL

05/05/2012 05:46 AM
JoLoBa
 
Posts: 458
Member

Yeah, I miss the wine. Sorry to say that I make up for it with a really good whine every once in a while...Laughing

Post edited by: JoLoBa, at: 05/05/2012 05:46 AM


05/05/2012 06:27 AM
gettingoldsucks
gettingoldsucks  
Posts: 3428
Senior Member

I did needlepoint a few times years ago. Made alot of xmas tree ornaments. I can see how it would be seriuosly hard to do with RA.

Clap, you sure can make some beautiful things from needlepoint. My mom is a pro at it. She did wall pictures for each of us kids to match our home decor. Had them beautifully framed and shipped them to each of us. Mine is a gorgeous Southwest scene and hangs in my bathroom. She also has the most gorgeous Christmas village, all needlepoint, I have ever seen. Has been working on it for 20 years. There is 72 buildings and a 3 ft tree sitting in the middle that is all done in needlepoint ornaments. I was in awe when I saw it last Xmas. Mostly because the pieces are so perfect and she does it with Parkinsons and severe Essential Tremors. She is my inspiration.


05/06/2012 03:43 AM
claphappy
claphappy  
Posts: 4022
Group Leader

JoLoBa I have to agree with you life is to short to not drink a little wine. a glass every 4 months

Donna, that is inspirational.


05/06/2012 07:30 AM
Herblady
Herblady  
Posts: 939
Member

Donna, have you done books on tape? Or audio books? My friend has dry eyes and uses ointment in them...can't read anymore, she loves her audio books....just a thought...I too love to read....and thank goodness am still able to do it...

05/06/2012 11:48 AM
bits
bits  
Posts: 10865
VIP Member

One of the hardest things for me to give up was holding a book. I used to ba a ravenous reader and speed reader which meant I went thru several books a week.

And loved it.

Dear God, how I loved it.

During freshmen year at college my evaluation for definitions/comprehension was Master Student.

Pretty good since I had never heard the words and could not prononce 90% of them. I knew them all and knew their meaning because I have always read and would come across these words learning their meaning thru the context of a passage.

Yes, I loved reading to a great extent.

I had favs but read everything. From TV Guides (the whole thing) to Clasics. If I had ran out of books I would grab an old TV Guide and read it again.

I never went to bed without having a book. I would read anywhere from 10 mins to 2 hours every night.

How I loved reading.

For awhile my ability to hold silverware, cut food was gone. Or even pick up a pill to take. It was awful.

But losing my hands to hold books cut much deeper. I grieved for 2 years.

It has been 4 years. I can use my hands to eat with, cut food with, and take pills with. But, I still cannot hold a book more than a minute.

I do read by placing a book on a pillow on my lap. I read only occasionlly now.

Of course I could buy a kindle or use auto, but it is not satisfying to me in the sense holding a book, smelling the pages and covers, touching the pages is.

I still miss my many books.

Hugs


05/06/2012 03:22 PM
claphappy
claphappy  
Posts: 4022
Group Leader

Bits I have been a late bloomer where books are concerned. but I love to hold it as I read. I have many more books than I will get through. Anyway, Last Christmas Joe gave me a kindle. I asked him to return it if he could. He didn't quite under stand the holding thing.
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